Friday, February 25, 2011

Sweet Home AL to Home Sweet Home

After Daphne was discharged from the hospital, we moved into a hotel while we waited for Alabama and Utah to review our adoption paperwork and give us permission to cross state lines (this approval process is called ICPC). Hoping to expedite things, we submitted everything except Daphne's discharge summary to Alabama as soon as I got into town. Unfortunately, Alabama couldn’t approve anything without the discharge summary, and we couldn’t get that until the morning of discharge—a frustrating conundrum.

While Daphne was in the hospital, our lawyer tried to encourage Alabama’s ICPC coordinator to take a look at our other paperwork and let us know if anything else was missing, but she resisted. We’d been told that her review could take up to two weeks, so we felt frustrated by her attitude. I didn’t know her reasons for waiting, but I assumed that, in her line of work, everyone wanted to be treated like an exception, making her very reluctant to make one. But I kept thinking, if ever there were a time to make an exception, surly it would be for a baby who just had heart surgery.

When Daphne was finally discharged on Wednesday, February 16, we faxed the discharge summary and a medical letter requesting expedited approval to the ICPC coordinator. Will believed we would receive ICPC approval before the weekend, but I wasn’t as optimistic. I thought we would be in Alabama at least another week. In the end, Will was right. I received a phone call from our lawyer at 8:30 a.m. on Friday, February 18, saying that Alabama had sent approved paperwork to Utah and Utah had given verbal approval for us to come home. My heart started racing and my stomach tightened with excitement. I felt giddy, anxious, shocked, and delighted.

I pulled out my computer and began searching for flights out of Birmingham—nothing until Sunday morning. That seemed like an unbearably long time to wait. I called Will to report the disappointing news, and he suggested searching for a flight out of Atlanta, just 2.5 hours away. I searched through Expedia and found a Saturday morning flight with just two seats left—clearly another gift from heaven. I booked it without a plan for getting to Atlanta.

While my mom arranged for a rental car, I got Daphne ready for the day and began packing. By noon, we had checked out of the hotel and were on our way into town. Before heading to Atlanta, we had to return an oxygen tank to the medical supply company, pick up a revised medical letter for the new airline, pick up a rental car, and return the car I had borrowed from a local Church member. The errands seemed to take forever, but by 3:00 p.m., we were on the road to Atlanta.

The drive to Atlanta was smooth and uneventful. My mom and I drove straight to the airport and checked into a nearby hotel. When I woke in the morning, my stomach was tied in knots, and it stayed that way until I reunited with my family in Salt Lake City.

We arrived at the airport at 5:30 a.m., beating the rush. Getting through security with oxygen was much simpler than I expected. The Atlanta TSA agents were very kind, careful, and efficient. During our first flight (Atlanta to Phoenix), my mom and I had an entire row to ourselves, making it easy to care for Daphne in flight. She slept soundly during the flight and maintained stable oxygen levels. The medical supply company that provided the portable oxygen concentrator also gave me two rechargeable batteries that should have lasted 4.5 hours each, but halfway through our 4-hour flight, the first battery died. The second one seemed to be holding its charge better, until it started beeping during landing. When we arrived at the airport terminal, we had just 30 minutes before our next flight began boarding. I plugged in the oxygen concentrator and let it charge until the flight attendants forced me to board.

Our second flight was supposed to be less than 2 hours, so I felt confident that we’d have enough battery life to last through the flight. Before takeoff, several flights were redirected, and we ended up sitting on the tarmac for an extra 30 minutes. With just 45 minutes left in the flight, the battery began beeping again. I panicked. My mom called the flight attendant. I started to cry, not because the battery was failing (I was sure we could figure that out) but because I felt like a bad mother and I didn’t want to cause trouble for other people.

The flight attendants were very kind, assuring me this wasn’t the worst in-flight emergency they’d faced. They took me to the back of the plane, where I sat on the jump seat and plugged the oxygen concentrator into the plane’s power. I stayed there until it was time to land; then I went back to a regular seat. After landing, I returned to the jump seat while everyone else deplaned; my mom and I exited last.

We rushed to the baggage claim, where Will and Shelby were waiting to greet us. When I saw them, the knots in my stomach disappeared and I felt relieved—relieved to be safely on the ground, relieved to have my eternal companion within arm’s reach, relived to have both of my girls in one state, relived to be home at last.

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Daphne Jane Gainer

A Brief, Beautiful Life

Daphne Jane Gainer was born on January 20, 2011, in Birmingham, Alabama. She was adopted one week later by Will and Rachel Gainer, residents of Salt Lake City, Utah.

Hours after birth, Daphne was diagnosed with a congenital heart defect (CHD) known as pulmonary atresia, which prevents blood from returning to the lungs to receive fresh oxygen and results in a severely underdeveloped right ventricle.

Living with just half a heart, Daphne spent all but three days of her life either in the hospital or on supplemental oxygen. She endured three extended hospital stays, two heart surgeries, one heart catheterization, and countless needle pricks, blood draws, and other tests.

Daphne passed away on March 18, 2011, just hours after undergoing her second heart surgery. Her life on earth lasted just 58 days, but it was both miraculous and inspiring.

This blog is maintained by Daphne's mother, Rachel Gainer. It celebrates Daphne's life, explores the realities of grief, and affirms that death is not the end and families can be together forever.